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Tumbling Down the Congenital Heart Defect Rabbit Hole

The sole reason I started an Instagram account was to connect with other NICU/heart and CHD families. It finally felt as though I could be honest, really honest with how I felt no matter how dark it was. I felt understood, supported and comforted by those going through the same thing, reading their stories. From there my blog was born, and from that so was the NICU Mum #medicalfiles. For those who haven't already please see my other amazing ladies stories by clicking to view Carly's NICU story, Rachel's story and Lisa and Oscar's autism journey.I found the lovely Marcelle via the world of social media and began to follow her and her son's story. So many of her posts, her words, her pics instantly drew me back to waiting for Elijah's surgery and how low I really felt. This fellow heart mama and her wonderful heart warrior son have been through their own CHD story and this is that story in her own words.

Your son needs open heart surgery. Hearing the cardiologist say those words absolutely floored me. For the past few weeks I was adjusting to the idea that my one year old had something wrong with his heart, something no one had picked up on for the first year of his life. Yet I never could have prepared myself for this news.

Will right before his first birthday.

Will’s first year was pretty normal, lots of happy memories and, like all babies, full of firsts. Meeting family and friends, rolling over, eating solids, regular pediatrician check-ups and the list goes on and on. This list also included his first real illness. In February, Will came down with icky symptoms that continued to worsen: cough, diarrhea for weeks, blood in his stool, 105 degree fever, throwing up, pink eye, ear infection. Being a new mama I was very concerned but tried to remind myself that kids get sick and he would get better. The pediatrician at first treated this all as a normal first illness. On the second office visit in the same week, the pediatrician confirmed that something was not normal. She heard a heart murmur and, because his symptoms were so severe over a long period, she sent us to the hospital that night for further testing.

While I knew things were worse than I had imagined, I tried to remain calm and hope for the best case scenario. Despite my efforts, a stay in the hospital suddenly made things feel very serious and we spent a sleepless night while a series of tests were run. The diagnoses the next morning was that he had four viruses all piled on top of each other. No other issue was found, and he was discharged with instructions to follow up with our pediatrician a few days later. My husband and I felt relieved. Will was on the mend, his fever had broke and he was showing signs of improvement. Thankfully, and to the credit of our pediatrician at a follow up appointment, she saw that the EKG she had ordered hadn't been done in the hospital and wanted one done just to be on the safe side. She still heard the murmur. So, feeling good about Will’s progress, my husband, Will and I trotted over to the imaging lab.

The techs aren’t suppose to share anything about an EKG result but his face said it all. He assured us our pediatrician would see the results immediately. She called us no more than an hour later and confirmed that yes indeed something was abnormal and we would need to see a cardiologist. The EKG showed right ventricular hypertrophy and right atrial dilation as well as borderline AV block. She tried to reassure us that it could just be stress from the illness but it would be good to gather more information. Again, we clung to the best case scenario but couldn’t help but scour the Internet for reasons his heart was showing these EKG results.

As it turns out, the first available appointment at the cardiologist was on Will’s first birthday. Not really the celebration we had imagined for him. Another EKG and exam later we were told with a cheery disposition that only a cardiologist could posses with this type of news: “There are innocent murmurs and not so innocent murmurs…”. This was a not so innocent murmur.

Without an echocardiogram the full diagnosis wasn't clear, but again we were reassured that it likely was a minor defect, a defect needing to be monitored or repaired via catheter. Holding on to hope by the skin of our teeth, my husband and I clung to the most positive scenario that Will would only need a catheter. I mean, he lived a whole year with no one knowing, no visible symptoms, so it didn't seem possible that it was super serious. Right?

Wrong. he echo tech sent us straight to the cardiologist after finishing where we were told Will would need OPEN HEART SURGERY.

My son’s CHD is atrioventricular canal defect, also known as AVSD or endocardial cushion defect. Essentially it means that there were two holes, one between the ventricles and one between the atria, along with fused mitral and tricuspid valves basically creating one large chamber of the heart instead of four. This means all the oxygenated and deoxygenated blood was mixing and his heart was having to work harder and pump more blood through the lungs in order for him to get enough oxygen.

Learning the technical language helped provide some reassurance, but I couldn’t help feeling a myriad of emotions. I felt sadness that he would have to go through OHS, guilt that somehow I caused the defect and that we should have found it sooner, and fear, lots of fear. Fear that there was permanent damage since this defect is usually fixed by six months old, fear that his life would be hindered by his CHD, fear that he wouldn't make it through the surgery and fear that this was all the time I was given with my little love. The night after finding out I remember crying with my husband as Will slept peacefully.

Despite these intense emotions, I tried my best to remain calm and upbeat when I was with Will. Children are sponges and can sense if something is wrong and I wanted him to be as happy and healthy as possible. After the diagnosis was made we went to follow up appointments and he had a cardiac catheterization done to learn more before undergoing surgery.

Me and my son a few days before his open heart surgery.

This is where I have to pause and somehow try to convey just how crazy this rabbit hole became. Within a few weeks we went from thinking our child was experiencing his “first illness” to discovering that our child needed open heart surgery. In many ways we were lucky to have the time to process, but this perspective only came with time.

In the weeks following his diagnosis I tried to digest all the new medical terms and what this would mean for my son. I read the descriptions of his defect over and over again, looked at diagrams, searched blogs, Facebook and Instagram for understanding and answers. I wanted to do something to change our reality but at this point all I could do was gain information, and really at one point I had to try to stop because it was driving me crazy. Sleepless nights, crying in the shower because I didn't want to do it in front of my son, keeping a journal to process all the emotions and reaching out on social media to learn from others who had walked this path before me. I don’t know how to fully describe the shift in reality that occurred, but it did and somehow we’ve made it out the other side of his surgery. Thank all that is good and holy in this world.

The night before his surgery we were already at the hospital and I stayed up all night holding him. I couldn’t bear to set him in the crib. When he went into the operating room a rush of emotion was released, I sobbed uncontrollably in the middle of the hallway and I had to accept the helpless feeling that I couldn't do anything more except pray all would be okay. His surgery was longer than expected due to an unexpected complicated repair of the valves, and in all we were away from him for about eight hours. Those were the longest and hardest eight hours of my life. I gladly would go through the 36 hour labor I had when he was born to not have him have OHS again.

Will 5 days post-op.

Thankfully his surgery went well but it turns out the fused valves were more complex than they could tell from the imaging and may need to be replaced down the road. There are still unknowns about his future but I am coming to terms with this being a fact of life, and especially life with a heart warrior. Moving forward I will try to focus on the positive, he is six weeks post-op and we are getting back in the swing of “normal” life. I know I spent most of my time telling about the pre-surgery part of our journey but in many ways this was the hardest part (except the day of the surgery).

I am grateful to the incredible community of heart families I found online of parents and CHD survivors. The support, love and understanding from once strangers, now friends, has helped me through the intensity leading up to surgery. I also know I couldn’t have navigated this journey without my husband and the support of family and friends, not to mention my utter amazement at how strong and resilient my son is. This experience has absolutely made my family stronger.

A saying I came across early in my research of CHDs is, “An Open Heart is a Strong Heart.” I feel this to be true on so many levels, and no matter what life throws at us next I know my family can take it on with determination, love, acceptance and an open heart.

Will 6 weeks post-op and enjoying exploring the world again.

If you want to know more about our journey you can find us on Instagram as @heartwarriorwill or feel free to email me at marcelledonehower@gmail.com